What Families Want Therapists to Know About Schizophrenia (Ep. 55)

Guest: Leah Brennan, Leah Brennan, LMFT, CADC 

Leah Brennan is a Licensed Marriage and Family Therapist and a Certified Alcohol and Other Drug Counselor.  

Leah got connected to 3 Moms In the Trenches through her clients. Over the past five years, she has had four different parents on her caseload who were all confronting the reality that their sons met the criteria for a diagnosis of schizophrenia. 

 Leah realized that despite her excellent training, she was not adequately equipped to help these parents navigate the challenges they were facing. 

 Leah has a lot of questions for the 3 Moms community that all center around the theme: "What Do Parents/Families Wish Their Therapist Knew About Schizophrenia?"

She asks us:  

How can mental health providers better communicate a diagnosis of SMI when we make it? 

What do therapists/mental health providers need to understand about HIPAA? 

What should therapists know about THC or other substances being used in relation to dx of SMI?

  What should caregivers/advocates/parents look for when partnering with a psychiatrist and treatment team for their child?

 What kind of mental health support is useful when the family isn’t in crisis/loved one is stable?

 What needs to be taught at graduate level courses for LMFTs, LCSWs, LCPCs , etc. re: treating families impacted by a diagnosis of SMI? 

How can/Who should therapists alert and educate in the larger communities BEFORE kids reach the age when symptoms of SMI typically start to manifest? 

We ask Leah:

• What can therapy do for me as a parent of a child with a diagnosis of schizophrenia? 
• How would you assure someone who wasn't fully comfortable engaging in therapy that it would be a good use of time/validating?

Links:

Leah Brennan: 

https://www.leahbrennantherapy.com/

Mindy and her book: https://mindygreiling.com/

Randye and her book: https://benbehindhisvoices.com/

Miriam and her book: https://www.miriam-feldman.com/

Hosts:

Who:

Randye Kaye - was a morning Radio Personality bringing humor to CT families when her own son was diagnosed with schizophrenia. Now she is still a Broadcaster, Actress, Voice Talent, Speaker, and Author (Ben Behind his Voices, Happier Made Simple)

Miriam Feldman -  is an artist, writer, and the mother of an adult son with schizophrenia. Her book, "He Came in With It" chronicles her family's story and was released to rave reviews on July 21st, 2020.

Mindy Greiling - Mindy Greiling was a member of the Minnesota House of Representatives for twenty years. She helped found the nation's first state mental health caucus, which successfully lobbied for a significant increase in Minnesota's mental health funding Her acclaimed memoir is “Fix What You Can.” 

Transcript

Copy Transcript Copied

SPEAKER_00 0:01

Welcome to our podcast, Schizophrenia. Three moms in the trenches. From the place where schizophrenia and real life collide. East Coast, West Coast, Middle America. With Miriam Feltman, Mindy Gryling, and Randy Kay. This is episode 55, and welcome. Today is really interesting because we're going to turn the tables. I have no prepared statements except a bio to read because today we're going to turn the tables and we have a therapist here who's going to question us and we get to answer the question. So the topic for the title for this episode is What Do Families Wish Their Therapist Knew About Schizophrenia? And our guest is a licensed marriage and family therapist and a certified alcohol and other drug counselor. And she's not new to this. She's been in the field for 15 years, has her master's in marriage and family therapy from Northwestern. And she's trained in also attachment-focused EMDR, eye movement, desensitization, reprocessing. So I Leah Brennan is her name. And Mindy, I'm going to hand it over to you because you're the one that made this connection. And I'm going to let you do the transitional statement. And then Leah, I'm going to pass it on to you to start asking us questions. Mindy.

SPEAKER_03 1:33

Several years ago, um, I was part of a group of women leaders, many of us were state legislators, that were interviewed for a book that a wonderful psychologist here in Minnesota was writing, and Nancy Ankeny. And she is the one, when she heard about our podcast through a mutual friend of ours, recommended Leah. And I didn't know until just right before the program here that Leah is a friend of her daughter's. And so clearly Leah Brennan is very qualified to be there. And she also has this connection with a mutual friend of mine. That book was published, by the way. And that uh was my only experience with a psychologist or a therapist. I've never gone to one. So this is a very fascinating program for me. Most people I know that are dealing with sons with schizophrenia have therapists, and I'm an oddball. So I'm fascinated by this program. Thanks. And what is what is the name of that book? I don't know. I can't, I mean, I have it in my bookshelf downstairs, but I can't remember the name. I have it. No, no. Do you remember the name?

SPEAKER_02 2:44

Minnesota Women in Politics. And Nancy um wrote this book, Nancy Inckney in in St. Paul, Minnesota. She just a wonderful, wonderful clinician and a wonderful person. Um, wanted to um get on record what makes women in Minnesota, what what got them into politics? So family of origin stuff, was it experiences growing up? Was it a mentor or a teacher? Who who kind of helped guide women who wound up in Minnesota politics? Um, how they got there? And so Mindy was one of the interviewees. Um, and when I heard about the podcast, I said, that name rings a bell. That name rings a bell. And so I called Nancy and I said, Do you know Mindy Grindling? And she said, Oh yeah. So that was the connection.

SPEAKER_03 3:29

Okay. And I don't think I even mentioned mental illness in that book. I don't think I did.

SPEAKER_02 3:35

I think it was prior to Jim being sick. It was it was a long, long time ago. I was still in college, I think, when she wrote it.

SPEAKER_00 3:44

Wow. And now you've been 15 years practicing. And my understanding is that you wanted to kind of grill us and find out what we go through and how you, as a marriage and family therapist, can be better informed, which I love because all of us have had the experience of having therapists not understand what we're going through. So I so applaud your being here and wanting to question us. So, Leah Brennan, unless there's anything else we need to say about you that we don't know, I would love for you to take over and just ask us what you want to know. Okay. Well, can I lay a little groundwork? Absolutely.

SPEAKER_02 4:27

Um, great. Okay. So the reason I'm I'm so thrilled to be here, I find the three of you amazing. And I know you hear that a lot, but I there's um it's just been really inspiring to listen to your tenacity and your your just the the warmth and the generosity of spirit that all three of you bring to I've I've all I don't know if I've heard all the episodes, but I've heard a lot of them. Um, because it's one of the main places I came to when I realized I am completely not prepared to help um families who are dealing with the diagnosis of a minor or adult child with a severe mental illness or and or and or schizophrenia, right? Um, and so what happened was in the last maybe six years, I've had four different families. Um a couple couples and another and two more individuals um coming to me saying, Hey, I've got something going on with one of my kids. And it became clear over time in different ways, which each of each of these clients that there was a severe mental illness going on. There was psychosis, there was, it was, and then eventually all four of them were in these in these families, were all the the the adult children, all sons were then diagnosed with schizophrenia. And so these clients of mine we'd meet. Um, this is all pre-COVID, so it was all in person. And I was just I am great, I'm I got a great education. I have an amazing degree, and I'm I'm a seasoned therapist and I'm acknowledging I'm not ready for, I'm not prepared for this family. Um and that's the problem for me. I don't, I don't, the way that I practice, I I consider my clients to be the experts at their issues and the experts at themselves. Um I the and metaphor I use is I'm carrying a flashlight that they don't have. And we're walking along, they're letting me walk along their path with them, their life experience, their family experience. And I happen to have this special flashlight that they don't have. So when I shine it on the path, we illuminate different things that they haven't seen because they've been walking this path almost in the same way over and over. And my goal is to teach them how to create their own flashlight so that when we aren't working together consistently or we've taken a break or terminated, they are they've got they've got that illumination. And I can't do that if I'm not informed, right? Um so I did a lot of research, started to look around, I found your podcast. One of my clients actually said, Have you heard of this? And then I started listening.

SPEAKER_00 6:52

Wow. Yeah. Well, thank you. That's I so applaud your uh curiosity and and your awareness that you don't know everything because I think it's been difficult. I know Mindy has never tried it, but you know, it's been difficult for me in therapy to I I I'm not currently in therapy, but when things started with my son, I went to see somebody to see what I could do, and they really couldn't understand. So I really applaud this.

SPEAKER_03 7:26

Yeah, I I appreciate your honesty. And even though I haven't been, Jim has been too many therapists, and I have never felt like I had a relationship with them. So the fact that you're here, you're so honest and open.

SPEAKER_01 7:40

Uh, thank you. You know, we spend so much of our lives pounding on doors and screaming at the top of our lungs. Listen to us, listen to us. We have important information and to have, and so rarely have I ever heard a therapist say, wow, I want to really hear what's going on with the family.

SPEAKER_02 8:01

Yeah, that's just an anthematic. I I think that's nuts. I I don't know who I don't want to throw another clinician under the bus, but I I don't quite understand how, you know, I I grew up learning something of, you know, if you don't kind of stay in a stage of being humble, you're gonna get there pretty quick. And so I'm I'm trying to be, you know, this is my humility here. This is, you know, I don't have to know everything, but I I think I am obligated as a professional ethically to learn what I don't know.

SPEAKER_00 8:26

Okay, so um, since you have listened to our podcast a bit, you know a bit about our stories. And I just want to speak for a second to any listener for whom this is your first episode. You may be listening. It is episode 55, but there's a lot of episodes in which you can hear our stories, but that's a lot of listening. So we are three moms who have three sons, my our three sons, and they've each been diagnosed with um a serious mental illness called schizophrenia. We have each written books about our experience to try to turn our experience into learning for others. And we have this podcast. And so, you know, our our books are you can check the show notes for them. They're called Fix What You Can. He came in with it and been behind his voices. So, Leah, you know you may know a little bit about our story, but uh you've only listened to a few episodes. So I I filled the listeners in as best we can. And so I know there's three of us here. If you were run, if you were running a group of families dealing with schizophrenia and a loved one, what might be your first question? Like, what would you want to know?

SPEAKER_02 9:41

You well, I'd you know, thank you for coming. This was a group therapy session. I know it takes a lot of courage to get out of the house and come and meet with people maybe that you don't know very well. So I think that takes a lot of courage. Um, I would, you know, if if everybody's comfortable as you are comfortable, if you could just let me know um kind of what you want me to know, what you think it's important for me to know as we work together. I mean, I don't I'm not gonna do a full therapy session, but this is kind of how I would approach it is what do you want me to know? Um, what is important to you that I fully understand before we kind of really get going or as we move along in our work together about your experience with your son and it's with yourself and with your other family members. I'm a family systems therapist. So that means I never look at the individual in my room if there is only an individual in my room. And I'm I'm always thinking about the other people in your life. Um, how things bounce off and are recursive and interplay and intersect with each other.

SPEAKER_03 10:38

Well, we have had a program on siblings, but that would be one thing I would like you to know is that it's very hard to navigate with a very successful child and then one with schizophrenia who we never want to sell short. They can do a lot, but they're not going to be the same as they were before, and that impacts the whole family. But the sibling relationship, I think all of us believe is key. And then also, you know, it it creates divisions with the with my husband and myself because we have different ideas about what we should do with Jim or who's doing what or who's doing more, or who's um, you know, paying off the bills when someone else is me, in other words, thinks that that that's a real good way to go for the whole family to go bankrupt, et cetera. So I think um the fact that mental illness impacts the whole family is key.

SPEAKER_01 11:34

Yeah, you know, um it's interesting, Minnie, because that's what I was gonna say. And and you know, to my two partners here, we haven't really delved too deep into what it does to a marriage. We haven't really talked about it very much, and that's a big, big component to this is how you navigate this new world and somehow, and we've all three of us, we're still married, you know. Usually, not usually, but so often you hear it destroys the marriage, and I can see how that's possible. So I think that yeah, how do you how do you maintain a marriage and deal with the immensity of something like this?

SPEAKER_00 12:16

Yeah, yeah, I would chime in with that, where now my situation is a little bit different from the two of you, in that my husband is not the birth father of my child. This is my second marriage. And so when my husband Jeff came into our family, he knew what he was marrying into. I said, Look, this is the package, you know, you get me, I don't cook, and one of my children will probably have a relatively normal life, and one has schizophrenia. You know, he knew it, and that's what he married into. So he steps up to the plate absolutely, but he's never had the chance to be in love with my son. We all knew our sons when before their illness reared the ugly heads. And other than watching videos, my husband didn't have a chance to fall in love with my son the way he's fallen in love with his grandchildren. And so he's a very dutiful dynamic and he steps up to the plate. And in a way, it's easier because he lets me call the shots and he does what I ask him to do, um, because he wasn't there from the beginning. But that also makes it uh, you know, a little, a little different. You know, this the step-parent dynamic is a little bit different. So um yeah, that's what I will add to that.

SPEAKER_02 13:42

That I mean, I think that's amazing. These three different, I mean, it's such a testament to, I think, you know, it's a reflection on you guys that you're partnered up so nicely and and in and staying and and sustaining that. I mean, I think that's hard with you when you just have a normative kind of experience of parenting, um, as opposed to this is you know, this is isolating and can be lonely, is my understanding from listening and reading, is this can be isolating and lonely as a parent. Um, and maybe even as a spouse within the relationship, if if one spouse wants to handle it differently or or just has a different kind of approach to the division of labor.

SPEAKER_01 14:17

And it's not just the division of labor and tasks and how you deal with it, you know. Um, Randy, sometimes like I think in hearing from what you just said, maybe it's kind of a blessing. I don't know, Mindy, what you go through, but what I experience with my husband and I see around me with other couples in the same situation is it's I think it's easier for us as women, as mothers, to move forward with this seismic shift in what it means to be a mother and who this child is going to grow up to be and all of that. I think men get stuck. And I think that especially with their sons, it triggers things in them, and there's so many complex psychological and emotional things at play that it's very complicated, you know, it's very complicated because I think precisely because they were in love with this person, this son, and they had all those dreams and ideas, and they see this person, this son, as a reflection of them, as a part of them. And I think it's very complicated.

SPEAKER_02 15:34

I hear, I hear that you know, a therapist when we live working with a family where this is going on is is needing to be some kind of a good grief counselor. I mean, this is such a loss of expectation or unmet or unexpected, you know, unexpected um parenting demand, long-term and short term.

SPEAKER_01 15:52

Well, it's a loss, it's a loss, not only of that, but it is you've lost your son. And you lost the person you knew, and it's a different person. And so you have to find a way to mourn the loss of your child without any closure because they're still here. And so sometimes, you know, through this whole path, I thought it would be easier if he had just died in terms of managing my own feelings.

SPEAKER_03 16:19

I think we've all felt that way. Um, one thing I've noticed as I, and I'm the oldest one of the three of us here, is when I get together and I'm in two groups with one is five moms, and one is the mom's trying to the fifth. And they're all so I'm with um uh nine other um mothers who are who are younger than me, and they still remember the son that Mimi's talking about that that uh she fell in love with. I'm to the point where I can't remember anymore what Jim was like before he got sick. He's 45 now. He just had a birthday on Monday, and he got sick when he was 21. So all of a sudden, or not all of a sudden, but gradually, he's become who he is, and we just appreciate him for who he is. And I cannot remember, I can look at pictures, you know, and kind of think of things, but but I don't think of him before and after anymore because of my memory's gotten foggy. And I think that's helped my husband because he is not. We're I think we're done grieving too, you know, most of the time, and we're on to what is, and then trying to cope with uh what we have. And our biggest fear then is not the grieving anymore, but the what next when we're not here.

SPEAKER_02 17:42

So it also needs to be the therapist needs to be ready to help the family or the the parent in the in my like if it's you guys in my office, I need to be prepared to help you over the developmental lifespan. Um it's it's not just the acute chronic stuff, it's also, you know, 20s, 30s, 40s. And then as you as a parent are aging and maybe not as you know, available or mobile or whatever else is going on.

SPEAKER_03 18:07

So far, so good. But I just answer this.

SPEAKER_00 18:11

Well, it's it strikes fear in the heart of any parent, no matter how healthy the child and um certainly that that comes into play at the at this point. We all have children in their 30s and 40s. We hear from a lot of listeners who are just starting out, and and that's not a fun thing. You know, they're in crisis. What do I do? How do I do it? That my child has delusions and he thinks I'm evil and I don't know what to do. And how do I kick my child out of my house? And we're aware that we've been at practicing this for quite some time, and so we have a few answers. I will say that in my experience prior to this, and I hope this will help you, Leah, is the least helpful things I uh uh encountered was oh, maybe there's something wrong with your parenting, and you could you could have prevented this, or you could have seen this sooner, or you could change your parenting, or you know, that kind of blame that families get is something that was not helpful. I had one therapist, I don't know where he studied, and he actually since apologized, who said, There's nothing wrong with your son. I think he has ESP, and that's a burden. So you have to nurture this gift. When my son was really having psychosis. So, and then there was another therapist who said, You're just too overbearing. If you just get him his own apartment, he'll figure it out. So there are, I think my biggest beef is that, and I know there's a Canadian author, Susan Inman, who wrote a book called When Her When Her Brain Broke or something about her daughter's schizophrenia. And her big beef is that in Canada, to be qualified as a school psychologist, you don't have to take courses on major mental illness. And I can't speak to many of the programs. And maybe Leah, you can tell me what your program was like. But I do have a friend whose daughter has a master's in school psychology. And uh taking a class on major mental illness was an elective. So I would say that it with four one out of four families dealing with serious mental illness, that it should be a requirement, not an elective. So, and and that includes understanding that by the time you meet the family, we're yeah, we seem a little crazy because we have tried everything under the sun and we're already at the end of our rope. And the stress level that we've been living with, unhelped and uneducated and unsupported and disrespected, can make us seem as if we are the problem when probably nine times out of ten we're not.

SPEAKER_02 21:10

Absolutely. I mean, that's just, you know, so so what I'm hearing there is again, this idea of respecting who's coming into your room. Um and, you know, this idea of blaming a family or blaming a parent, or you know, the really that's I guess it's not unfortunately so old school to blame the mom is is just such an outdated mode of thinking. Um, I'm in in substance use this in in addictions treatment, we talk about um you can't control the addiction, you didn't cause it, and you're not going to be the one to cure it. And I find there's a lot of overlap, or I'm hearing in my own brain, hey, this is so similar to how these, how we can approach this. Um, one day at a time, living life on life's terms. Those are old AA adages that I think apply um when you really need a trite saying to help you get through that minute or hour with whatever something's going on. But the idea that, you know, this is not something a parent caused. Um being a loving parent, doing the best they know to do at the time. This is not something that we can lay at their feet as it's, you know, you cause this. Um so therapists would probably need to do some help healing and validating, hey, that wasn't okay if you heard that from another mental health professional or practitioner. You know, I'm sorry that that happened to you. You know, because I would imagine that would erode trust. How could you come back into somebody else's therapy room and try again? Or how could you ask your husband or partner or or other children to go to family therapy if they would already experience something like that?

SPEAKER_01 22:36

Honestly, we feel so much at the time of the time that we're if not at war with certainly in some kind of high-stage chess game with the health providers. We don't feel like they're on our side.

SPEAKER_02 22:52

Yeah.

SPEAKER_01 22:53

I mean, don't don't you guys feel the same way in general?

SPEAKER_00 22:57

That not right now with Leah. I'm feeling pretty good about Leah.

SPEAKER_01 23:00

We like Leah. But I mean, through the 20, 30 years we've all been going through this, it's um I feel like I'm jousting with them. You know, it nobody's worrying about me, and nobody's worrying about the big picture, the family, unless I'm constantly shoving it in their faces, and then I'm the pushy obnoxious mom. So it's like lose, lose.

SPEAKER_03 23:26

Yeah, that's the same way with me, except for now, and maybe that's one reason I'm calmer than I have been most of this journey is Jim has this incredible psychiatrist, you know, Dr. Rob Lateman, who includes me in the Zoom calls with Jim. He doesn't even, can you believe it, Leah? He doesn't use HIPAA. He's in private practice and he says to hell with it, and I haven't signed a thing. And he, you know, we converse as if it were uh before HIPAA. And that is like such a that does more for me. And Jim is thrilled too that we're all together. I think he thought we by the time he got done with the mental health system, saying, Do you want to do you want to sign this? Do you want your parents, you know, knowing everything? I think this the fact that we're all on the same side for him is a relief to him as well. This HIPAA burden uh just drives me nuts. Um, but one I just wanted, so we maybe want to talk about that, but also I want to ask you, Leah, you know, do you think there would be anything in it? And how could you convince someone like me whose son has been sick for um, you know, almost 25 years? Would is it too late for me or what could I get out of therapy? And then how is that different from somebody that's starting out?

SPEAKER_02 24:47

Yeah, um, it is not too late for you. Um, we can all be in therapy at some point in our lives for some period of time for some issues, you know. So um I would invite you to really consider how much you deserve your own individual empathic witness to your experience as a mom of Jim, but also of your other kids. I think you have another daughter, I think, right?

SPEAKER_03 25:13

Yeah, Angela is two years older than Jim.

SPEAKER_02 25:16

So I'll speak to you like I would any other parent who's either resistant or never done it before or just kind of not sure if it's for them. I would just say give it a shot. Um, maybe decide you want to commit to two sessions before you really assess whether this is for you or not. And um try to find somebody that through someone that you know or someone that you trust. And no matter what, just give it a shot and go in. And and you want to, I think you want to assess for um warmth, um, someone who who wants to form an alliance with you, someone who looks at you as the expert at your experience and your issues and who's there to um co-create solutions. Um you know, you want a therapist who's flexible and has kind of has breadth as well as depth. And I guess this is the other this I'm my my theme here is I've got breadth, but in this issue with severe mental illness, I don't have the depth that I need, given that this is showing up on my caseload. And there's clearly a dearth of therapists who who have that depth. To your spouses or a a parent or another child, you know, another member of the family or loved one who doesn't want to come in. Again, again, a similar thing to substance use disorder. It's a family disease. It might be localized, the symptoms might be localized in one person, but it's a family disease because it's touching everybody in the family and then it's recursive. It's bouncing back from that family member to the other family member. Um, it's confusing and changing the roles and the boundaries. Um, that can be really disorienting and I think fatiguing. So let's talk about, let's just name that that's happening and validate that it's happening. Um, it's okay to come in on your own and really vent. You know, if you're just really mad at your partner or spouse or other kid or or your diagnosed kid, it's okay. Uh the therapist will be there to hold that with you and not judge you for it. That's what I would say. I don't know if that's convincing you. I don't, and that's another thing I want to say.

SPEAKER_00 27:10

Yeah, I'm like, wait, how can I make an appointment with you? So, how can we um this is already so so helpful just to hear your desire to understand is so heartening to me. There must be an opposite to disheartening. So I imagine heartening is a word.

SPEAKER_01 27:35

Yeah, that's a word.

SPEAKER_00 27:36

I think it's a word. So, Leah, how can we help you? What would you what would help you to know from being able to grill us in this way?

SPEAKER_02 27:45

Okay. So um I want to know. I I mean, we I we can talk about HIPAA for a million years, or maybe we can really have a quick conversation that could go the other way. That's the main thing I've taken from listening to your episodes, especially the ones around HIPAA, that we have misinformed and maybe been mistrained as mental health practitioners about HIPAA and how it constrains or does not actually constrain delivery of services. Um, so that is something I I'm taking on as I can to kind of educate myself, but also reach out to the people that taught me at the Family Institute to say, I think we need to maybe revisit this.

SPEAKER_01 28:22

Well, you know what the thing is, I think it would make a big difference. Yeah. I mean, because we'd love to change the HIPAA loss. That's a bigger endeavor. But I think that if providers, if clinicians, rather than saying to generally, you know, a young 20-something person, do you want your parents to hear about all this? If it was presented in a different way, like if you could sign this paper, then we would share information with your parents and everybody would be able to be on the same page. I think that when you you present it to the person with the mental illness in a way that's going to just trigger, no, of course I don't want my parents to know about it. That that that just kills it before it even could possibly happen.

SPEAKER_02 29:08

Okay, that makes so much sense. Hey, let's let's let's make sure we're all being able to collaborate. Since your parents know you better than I do. Your parents are truly the expert at you.

SPEAKER_01 29:17

Yeah, when these people, you know, schizophrenia is, you know, it emerges for men in their late teens and early 20s. Well, they're right on the heels of being a teenager where you don't want your parents to even know your name at that point. So, you know, of course they're gonna say no.

unknown 29:35

Yeah.

SPEAKER_02 29:36

You know, I would, I would, I, I can imagine myself saying, you know, it's it's it's you're really, it really puts me as your therapist at a disadvantage if I can't talk to your parents. Um, I I'm only with you for, you know, that's the other thing. I mean, I'm not, I'm not gonna see, you know, your sons in an outpatient setting, but I will see the loved ones and the parents in an outpatient setting. Right. Or maybe I'll see you with your son, maybe once or every other week or once a month, you'll you will come in and we'll do family therapy. But I would say to the son or the say the loved one, you know, we're you're you're putting us as a team at a disadvantage if if I can't have some communication with the people that spend all the time with you at home. And we could talk about, I would say, you know, we could maybe talk about some limits, some stuff I won't, I'll hold for a couple of sessions. And if you're not going to tell them, I'll help you disclose it. Um, but I would set a boundary and say, you know, I I I would I don't want to hold this knowing something that you know that we both know your parents don't know. I don't want to do that. So we probably have to find a way to disclose that.

SPEAKER_03 30:35

Not if Jim's psychiatrists um or therapists have ever talked to me, even if he has signed a release. Um, and I so what you're saying is like a foreign language to me. I can't believe it. What you're saying is a foreign language to me.

SPEAKER_02 30:52

How can I effectively treat someone if I don't have the whole picture? Especially complicated stuff like severe mental illness, where there's there's so many different changes going on day to day, minute to minute, hour to hour, week to week.

SPEAKER_00 31:07

Um, yeah. I would say it's really important. You probably already know this theoretically, but to understand the dynamic that people like our sons don't believe they need any help. You may have somebody coming into your office going, Oh, I have schizophrenia, how can I cope? But chances are no. Chances are they're gonna go, my mother thinks I have schizophrenia, how do I get her off my back? And so the language of everybody landing on the same page to help each other is much more helpful than um, let's do this or this bad thing is going to happen. It's it's this collaborative kind of thought. Also, if we're always taught, as when we take family to family or we go to a support group, that even though the psychiatrist may not be able to reveal anything that happened in the session with our loved ones, they can ask us for information. And even if you don't get a release, if you call the parents, I believe you have the right to ask us questions even without the permission of your patient. Absolutely. So I think most families I know of, and I realize your time is limited, and I realize there's billing hours, and I realize all of those complications, but even a 15-minute phone call of would you please share with me some of your observations so that I can get a clearer idea of what the family dynamic is, and always that that overarching view of I want to get an idea of what the family dynamic is as opposed to I want to know what your parents think. So it's just kind of in the way you phrase it. The three most powerful things I have ever heard from a practitioner. One was from a social worker who was working as a therapist, in a way, she asked me how I was. And I was like, Me? I mean, because every session was about my son. And after I got through half a box of tissues, she then asked, and how's your daughter? And there went the other half a box of tissues. But and she listened, and just anybody asking how we were, which never comes up, was so helpful. And in the end, I tried to turn the empathy around. Sorry, I've been narrating an audiobook all day on bone health, and my throat is a little sore. Um, I I turned the empathy around and I said, How do you do what you do all day long, dealing with families and and all this pain and all this heartbreak and seeing people cry? And she said, I'll tell you why I love my job, because I love to see people get better, and I believe your son will. And that meant the world to me. Yeah. Is he cured? Did she say cured? No, but she gave me hope. And the other thing that really helped me came from a nurse in a psychiatric hospital in my son's first 35-day stay when he was refusing medication, and it was a difficult time. But she said to me, You know what, Randy? We love your son. He, everyone else who refuses medication, they may push us or they may curse at us, and your son says, No, thank you, ma'am. And we know we can tell that you raised him right.

SPEAKER_03 35:02

He's a nice we can all count on our hands, um, on our hands, you know, not counting our toes. How many times anybody has ever in the professions has ever said any of those kinds of things to us? It's so rare that we remember them.

SPEAKER_00 35:19

You know, and we live on them, and we live on them.

SPEAKER_01 35:22

There's another component to this, also, from for the therapist, from your point of view, especially if if the therapist is providing care for the person with mental illness, which is on top of the fact that what Randy said about these are people who don't think anything's wrong with them, they also are not honest. I mean, I've sat in offices with my son, and the clinician has asked, How's your sleeping? And he'll say, Oh, fine. And I'm standing behind him going, shaking my head, no, no, no. And this is compounded with, you know, 20 questions, and he doesn't answer any one of those questions, honestly. So, how is the clinician going to provide the appropriate care when and and so so it would behoove the doctors to listen to us? You know, I know that we're pushy meddling moms, but it still would behoove them if my son had a disease that made him unable to speak, and only I could communicate the information, they would listen to me. This is this weird instance where they don't want to hear what you have to say when it would help them treat their patients.

SPEAKER_00 36:39

Are we bombarding you now?

SPEAKER_02 36:41

I know, I I'm just shocked. You know, I I it just it it's of course, of course, a therapist should ask, How are you? How is your other child? How is your partner? How is your marriage? How are all the other things and dimensions in your life that aren't surrounded or centered on schizophrenia? How's your job? How are your friends? How's your sister? How are your grandkids and your your nieces and nephews? How's the rest of your life? And and what's what's happening there? You know, that's another plug for therapy is you can just go and talk about that stuff. You could go and maybe pretend I don't have this happening in my real life. Maybe we spend one hour, we we just have this fantasy, right? But I'm hearing you guys say, we have to know what a nosonosia is. I know that's not how I pronounce it. A nosonosia. Anasygnosia. Anasygnosia. We have to know, we have to know how to pronounce it, and we have to really know and understand that as a cognitive, it's a cognitive deficit, right? It's not just a uh lack of insight, it's actually a a neurological impairment. Yes. And so we need to be trained in our graduate programs. This is one of the main ways it shows schizophrenia. This is something that shows up big time. They they don't answer these questions. They're that you need to reality test with a caregiver, a loved one, a parent.

SPEAKER_01 37:59

You know, they could take a lesson from the way that they handle people who have dementia or Alzheimer's. If your mother or father has Alzheimer's, the doctor talks to you, he listens to what you have to say, he gathers information, he keeps you in the loop, he confers with you. It is specifically with adult children with serious mental illness that they cut you out completely. And it's it doesn't serve anybody.

SPEAKER_02 38:29

Can I ask a question there? Do you think it would be different if your if your diagnosed children were female?

SPEAKER_03 38:36

Or if your husbands were no, because there's actually a study that the Treatment Advocacy Center recently put out, women actually get worse care because they're more passive and they don't cause as much trouble and they don't get noticed as much. So um I think that it wouldn't be different. It might be worse. Um we just my son is never not noticed if he's in crisis. He's noticed he's been civilly committed seven times and had extensions because he is noticed when he's in crisis. Um, you know, one thing about HIPAA, and it ties in with what Mimi is saying, is um the if the person is deemed incapacitated, then the doctors and the medical people, the psych, you know, psychologists could talk to families, never mind about HIPAA. So with Alzheimer's or dementia, they could conclude that they're they're incapacitated. And anasygnosia, you're right, so right, Leah. It is a neurological brain disorder that causes lack of insight. It's not being stubborn, it's not behavioral, it is a sickness and an inability to know you're sick. And so to me, that is capacitated, incapacitated. Absolutely. Have anasygnosia, if you're following the law, you ought to be able to talk to the families.

SPEAKER_02 39:58

Yeah. Well, there's law, but there's also treatment, adequate um, appropriate adequate treatment. I mean, how can I, how could I treat your son or how could I, I mean, how could I treat your son if I don't have all this information? Aren't I at risk of malpractice for for um making assessments or diagnoses or even having someone I can't prescribe, it's not my degree. But if I were a prescriber, how can I prescribe if I don't really know the full picture?

unknown 40:25

Yeah.

SPEAKER_02 40:26

I would worry about that.

SPEAKER_00 40:27

I would say definitely, and you know, I'm looking at the list of questions that you want to get to, and you're not really getting to any of them, but I'm I'm hoping this is helpful to you. It is. Um that I I believe there are a fair amount of practitioners out there who don't truly understand schizophrenia. And I applaud so much that you're learning about it. You know, I'll give you an example. So today I was with my son, and in an earlier episode of this podcast, we interviewed someone from a place called Fellowship Place in New Haven. It's a permanent housing situation with a huge waiting list for people with diagnosed mental illness problems and also homeless, which is often certainly a subset of the same category. And my son wanted to take a tour, so we took a tour. Now, my son is currently on a medication, and it's important to understand what medication they're on and how it works and what the side effects are. He's currently on a medication that I don't love. However, he loves it because it is available as a monthly injection. So it frees up his whole month until it's time. However, a few days before injection time and a few days after injection time, he fights really hard to be. And I'm using air quotes. If you're on YouTube, you can see them. If you're listening, just know that I'm using air quotes. Normal. So it's two days before injection time. And in the car on the way over, I knew we were in trouble because he started. I just want to get one thing straight, mom. You know, a couple of days ago, you asked me why I didn't seem to be focusing. And I just want you to know, I was just, you know, I wasn't distracted. I was just thinking about my thoughts. And you really think that my brain controls me, but I don't think the brain controls anything. And I know you think so, but I don't think so. So there started a whole thing about a lot of people think the brain, you know, controls things, but I think everything is a decision. And I had to just bite my lip to not try to talk him out of it because he is not thinking straight, but he thinks he's thinking straight. And the place he's in today is a place where his theories are more real to him than anything else. And I tried to turn it into a constructive discussion, and we were going this close to just arguing. And I can't, I decided a long time ago, it's not my job to convince him he has schizophrenia. But it's very hard to stick to that decision sometimes when he comes up with a theory that you know is scientifically incorrect. This is what families deal with. Now, he needs his injection tonight. I know he won't have his injection tonight. It's now time. His psychiatrist, who is should have retired 15 years ago, his answer to everything is he seemed fine to me. So they don't see the ins and outs of the everyday. Fortunately, he's in a group home, and and the head of the group home is in contact with me. And I wrote her and just said, This is what I see. And I know he's due in two days, but he said it might be three days. Please don't make it three days because he has to show up at work and they're already reducing his hours. And if they see him being Being distracted, who knows? There's only so much we can do. But these are the kinds of things we go through when he is in need of treatment, he begins to get even stronger into his belief that there is nothing wrong with him. Okay.

SPEAKER_02 44:15

And yeah. If I could just offer, if I may, you know, what I'm hearing there is then you're you would want the therapist. I'm I'll just tell you if you were my client and your family was my client, I would say um that in my line of work is a it's uh it's called a sequence. So there's an S1, S S1, S2, S3, S4. S1s, I don't know why where I was trained calls it this. I I've never found out, but I it's ingrained in my brain. S1s are familial patterns of interaction that happen multiple times a day. Good morning, honey. How are you? Did you walk the dog? Um what time can I pick you up? S2s are spread out further, they're usually every few months. S3s are anniversaries, birthdays, death days. S4s are generational. The first born son of four generations left home and at 16. That's just one example. So what you're describing, I would, I would, I would name for you and and your family as an S2. And I would we would put into place, we would name it, we would validate it, we would explore what it was like for everybody in the family. Oh, it's three days before Ben needs his injection. We go through this a version of this every month. And man, are we tired?

SPEAKER_00 45:28

Yeah.

SPEAKER_02 45:29

And so I would bet, I would bet if this were a year-long thing and I've gone through this 11 times and I've got one more next month. Oh, Jesus help me. So when when he first gets the shot, or when he's the most um out of in in insight and aware, we would come together and we would talk about it and we would say, we're gonna name it's gonna happen. What does mom and dad and all the other family members need to do to be prepared for it and then get relief from it and and navigate through that time? Um, I don't know how how frequent that is for everybody else. It sounds like this is a pretty amazing medication, but it causes problems for you on your end, right?

SPEAKER_00 46:07

It's it's amazing because and he has said to me, and you know, shout out to uh Dr. Amador and I'm not sick, I don't need help. He has literally said to me, I don't think I need the medications, but I'll take them because you want me to. And I'm like, I'll take it. Great. That's fine with me. I don't care. So you know, that this the kinds of things I can't believe we've been at this um 50 minutes. So um we can probably make this an hour episode, but I I want to make sure that you have had your needs met, Miss Therapist, who's all about your patience. But um, and we thank you for the three the free therapy. But um what what else are uh of the list of and we can do another one of these if you like in a in a couple of months because I think this is going to be helpful to all our listeners. And um, but what how can we help you in the last few minutes?

SPEAKER_02 47:03

The question I really long to ask is um, and I'm so grateful that you're making yourselves available in this way, um, how how how can mental health providers make the diagnosis and and inform you about the diagnosis? I I don't it's I can't imagine it's a great thing to hear, let alone it's not a great thing to say and explain. So even if I were really well versed in this, what what do families need? How do we talk to you about, hey, here's what I'm seeing? Like one of the first few initial times we talk about it.

SPEAKER_03 47:37

I will say that this is really hits a hot spot for me because, and I write about this in my book, this event, because it's one of the things I remember, not just those positive things, but negative things we remember too. Jim, when he he was diagnosed uh with depression and then uh bipolar and then finally schizophrenia. That's normal, that's how they do it. But what the time that he was in the hospital in crisis and was diagnosed with schizophrenia, I was walking down the hall on my way back to work. And the psychiatrist that had diagnosed him uh caught up with me and said, Um, you know, I really am so busy, I don't have time to talk to you right now, but I think you really need to know your son has schizophrenia. And I'm sorry, and I'm also sorry I don't have time to talk to you right now. And then she pretty much left. So I will say that's exactly the opposite of what one should do. And so what I most want, and my grandmother had schizophrenia, I knew what schizophrenia was, I thought it's very different though for each person. Certainly, Jim is very different from her. But what I wanted right then was um was some time. You know, I thought we should have been sitting in a conference room and she should have seen if I had any questions and given me some think time so I could take it all in. I couldn't take it all in even at that one time. But the idea that she just, you know, kind of um blasted me with that information and then was gone was uh very traumatic for me.

SPEAKER_02 49:20

Okay, that's awful. I'm sorry that happened.

SPEAKER_00 49:24

Mimi? What would you say?

SPEAKER_01 49:27

You know, I remember, you know, when I was told, but I um there's no good way. It's like, how do you tell someone they have a terminal illness? Um I would just say, give me the facts, you know, give me the information, don't beat around the bush, be straightforward. And maybe this wouldn't work for everybody, but for me, that's what I want. I want information. I want to know what this is gonna look like and what what it means and what we can do, because um one of the things I think that most of us mothers go through is years of not knowing what the hell is happening here. And we have a predisposition to be in denial because we don't want to believe it's the worst thing. And these diseases in their nascent stage, you know, I always say, if you were to give me a list of the red flags for serious mental illness and the list of normal teenage behavior, you'd have virtually the same list because they're nuts when they're teenagers. And so you go through all this time of you want to normalize, you want to normalize. And I think once there's a actual diagnosis, be blunt and make sure I get it, and then give me the information.

SPEAKER_02 50:47

So differentiate between what's normative in an in an adolescent at that age and and what is really a red flag for this. Is not as very confusing.

SPEAKER_00 50:54

Yeah, I yeah, I would I would definitely say to empathy is key, is key. Um, you know, and I keep thinking of ER and all those doctor shows, you know, where they first they say we did everything we could and we did to the best of our ability, and here's our bad news, but it is bad news. It's the worst news. Maybe not the worst news, that's all relative, but you know what I mean. Um what I found lacking was a lack of resources, a lack of education, a lack of respect. It would have helped me to even know before the diagnosis to have a hint. You know, I'm sure this is the last thing you want to hear. However, I have a suspicion this may be more than just teenage angst. I wonder if you would be willing to read up about schizophrenia and let's get together next time and see if you agree with my suspicion that this might be schizophrenia. If we know what it is, then we have an idea what we can do. And the earlier we catch it, the better it will be for everyone.

SPEAKER_03 52:12

That is excellent. I would have loved that. It's kind of like the grandma's on the roof joke, if you remember that one.

SPEAKER_00 52:18

Yeah, yeah.

SPEAKER_03 52:19

Tell that joke. I don't know that joke.

SPEAKER_00 52:21

Now you got to tell the joke. Okay.

SPEAKER_03 52:22

Okay, well, so the cat died, uh jumped off the roof and and uh died, and somebody relayed that to some other family member. And the family member gave Randy's answer. You know what? I didn't need to hear that quite so bluntly. Couldn't you have led up to it? And I could know that you know the cat was doing well, and then finally tell me that it died. So then the next time when the person called, the other family member said, Well, grandma's on the roof. So one had to assume she had died. Right.

SPEAKER_00 52:55

Couldn't you tell me the cat was on the roof before you told me the cat fell off the roof? Yes, yes, yeah. So there's a much longer version of that story, but you know, you get the gist. So yeah, so I think I think uh as hard as it would have been to tell us if we had had an idea of what the suspicion was. Yeah, because once I had a suspicion of what was happening, I started reading everything in sight. I and I went, oh my God, why didn't anybody tell me this before? Instead, they kept telling me how I could parent differently to make this different. Give them a written contract, let them sink to bottom, you know. So if there is a suspicion, as hard as it is to broach that, and you can even say, I may be wrong, but I have to tell you that one thing I'm thinking about is it might be this. And if it is this, there are treatments.

SPEAKER_01 53:48

When Nick Nick was first diagnosed with bipolar when he was 18, and that doctor said that. He said, and I want you to know that this is not a final diagnosis, it's unfolding, and I have a suspicion it may end up to be schizophrenia, and it wasn't years until it was two more years till he got that diagnosis, but when that diagnosis came, it didn't flatten me. You know, I I had some preparation for it, and like you said, I'd done some reading and all of that.

SPEAKER_03 54:24

I mean, no one told me that. I had just read when this psychiatrist uh let me know about this in the hallway. I had just read literally a grocery bag full of books about bipolar disorder. I didn't know that this was a progression, that they always said first depression and then bipolar disorder and then schizophrenia. I did think that was a final diagnosis. I was and I read all those books thinking, um, well, there's so much about schizophrenia. There's hardly anything about bipolar disorder. And but in the meanwhile, I was so relieved that Jim didn't have the worst disease he had bipolar disorder. So I had all reconciled to that. So I wish my doctors had done what Mimi's did and what Randy's recommending.

SPEAKER_02 55:13

I hear that loud and clear. Um, I guess what's what's in my head is we want again, this normalization of just talking about mental illnesses that exist, so that that no one's saying, I don't want anyone to be have to say I didn't know it was progression. I didn't, I didn't know this is kind of how it starts. Why don't we know that about well, I mean, why can't we know that just as a general piece of knowledge?

SPEAKER_00 55:37

Yeah, you know, a brochure. I when I keep thinking, I've said this before on this podcast, but when I was pregnant, there was someone in my doctor's office who was a childbirth educator. And when the doctor didn't have time to see me, I could spend time with her. You you get a diagnosis, you walk out with a pamphlet. Where are the pamphlets? Where are the lists of resources? Not everybody can read all the books in the world, but I'm amazed at how many people don't know that there is support available through NAMI. It is some groups are better than others. I agree with that. But just to know that I wasn't alone, to know that one out of four families deals with a major mental illness in one of their family members would have made me feel a lot better. The fact that I think things are a little different now. My son is 40, but I think people who have children with diagnoses of bipolar and depression and anxiety are talking freely about it. Schizophrenia is still a little bit in the closet, and we're trying to fix that with this podcast. But to know I wasn't alone, to know that there were resources out there, support was available, tell your patients about family to family as an eight-week option to learning in a classroom environment about the illnesses, and also meet other people going through the same thing that are there to learn. Um respect, listen to the families. Those are all things that I think would help. Do you have another burning question before we? Oh, it's 9:30. So I'd like just like a last, you know, last minute question. We're definitely going to bring you back if you'd like to come back.

SPEAKER_03 57:25

Of course. Oh my gosh, of course. Um, this has been wonderful. And you can see, I must need therapy because we're all going on and on and on as if we are therapy.

SPEAKER_02 57:35

I, you know, again, I I I can't recommend it enough, especially when you when you you I guess I would just say, you know, find, hold out and interview a few until you find somebody that you're like, this feels like a good enough fit for now. They're the right, um, the right, the right vibe, the right spirit for me, the right connection.

SPEAKER_01 57:53

You know, it occurs to me that if when delivering a diagnosis as dire as this, if the doctor or the therapist would have said to me, okay, this is what your son has. Get yourself a therapist, because this is going to blow through your life like a gale-force hurricane and disrupt every single aspect of it, if not destroy it. You need to get some help to deal with this. No one ever said that to me. Or better than that.

SPEAKER_03 58:23

That's what the psychiatrist should have said. If she was 10 to talk to me, why did she not refer me to a therapist? Yes.

SPEAKER_02 58:30

So so when we deliver the diagnosis, we need to say, and here is a list of therapists with this experience who who have met these families before who have a clue. Um, and they're within a 25-mile driving distance, and and and luckily three of them are on your insurance panel. And they and they have room for patients. They have room for patients. Yeah.

unknown 58:50

Yeah.

SPEAKER_02 58:50

Right. Because you're in no shape to be calling around. We just need to get you're in you're in crisis mode. You are in acute crisis mode.

SPEAKER_01 58:58

And you know, when this happens, we have other kids. You know, I had a business to run. I had three daughters, two of them were little, and I was MIA for years, and my daughters are now dealing with the fallout from that as adults, and they're working through it, and I'm tremendously proud of them. But I should have been guided to help them in a better way, too. And something like that happened. Absolutely, absolutely, absolutely.

SPEAKER_02 59:31

I mean, I have I have a ton of burning questions. I don't even know if I could pick the one that would just it's probably unpossible.

SPEAKER_03 59:38

Try to pick one where we would answer shortly. Um, how do you feel about substance? How do you feel about substance use and schizophrenia?

SPEAKER_00 59:47

Oh, that's another whole show.

SPEAKER_03 59:52

It makes it worse. It makes it worse for the person, it makes it worse for their outcome, and it makes it a hell of a lot worse for the family.

SPEAKER_01 1:00:02

You know, they need to tell us in complete transparency the relationship between things like specifically marijuana and developing schizophrenia. Because I think that, you know, we there's certain, you know, if you're if your kid's shooting heroin, you're going to take it seriously. Your kid's smoking a little pot, especially if you're somebody like me who came out of the 60s and all of that, and so, yeah, it's just pot. And it was well into this thing that it dawned on me and that I was told by a doctor that the pot can trigger it. You know, the marijuana, there's a strong relationship, and we need to know that.

SPEAKER_02 1:00:45

So it's so crazy to not crazy, it's so confusing to me and and concerning is what as a substance use counselor, subs an addictions counselor. I I now say, you know, we don't, you don't know, you you know if if you come from a fountain family of with with generational alcoholism, your children will be at risk as you were growing up. Um, we know to say that now we just don't know which which person's brain is going to react the way we don't we don't know. But and we say that openly now. We obviously say that about opiates, we obviously say that about cocaine, but we and now we finally say it about alcohol. But you're right, we don't we say the opposite about marijuana and cannabis, right?

SPEAKER_00 1:01:23

Yeah, and and you know, teenagers always think they're invulnerable. They that it'll never happen to me. I can drive fast, I can use pot, I can do, you know, they don't, that's part of their brains aren't fully developed, as you know. And so they think it'll never happen to them. And some of us feel the same way and we're fully grown adults. So I think it's part of why we we keep going. I would say that, and if if you continue to listen to our podcast, I would encourage you to listen to one, I think it's 51 or 52, about the woman who's trying to get substance abuse treatment and mental illness treatment in the same financial silo for funding in New York, um, Stephanie Marquez. Anyway, Harris, the Harris Project. Um, because they often coexist and they feed off of each other. And so yeah, it's hard to separate them. It's hard to separate them. And uh, but I do, I never thought that that pot would cause my my son schizophrenia. I was taught that his brain was going a little haywire, so he reached for it because it made him feel better. Now I'm not so sure. I'm not so sure it didn't trigger stuff, but you know, there's only so much a parent can do when marijuana is so freely available. But knowledge at least gives us one little leg up or a toe up.

SPEAKER_02 1:02:49

Sure.

SPEAKER_00 1:02:50

Sure. Anyway, it is this is a long show, but I'm I think it's an important show, and we'd love to do that.

SPEAKER_01 1:02:57

I think we could just do this every week. That's all if you want. Then we'd have to start paying Leah her rate.

SPEAKER_02 1:03:04

No, I I think we could trade, you know, your knowledge, my therapy.

SPEAKER_00 1:03:10

Fair enough. And I and I'll tell you what, you know, I posted this on Facebook today and I did have a few people say, Oh, ask her this, ask her this. So, you know, we will definitely talk about having you back. Um, let's just close the show with any final parting words or um I just want to say thank you and keep up the good work. If any of us have had had had a therapist with your quest for knowledge, I think it would have helped us all. So thank you for being here.

SPEAKER_03 1:03:41

Thank you for having me. I look forward to part two.

SPEAKER_02 1:03:46

Me as well. Awesome. Thank you, thank you, all three of you, for having me and all the work that you've been doing. Um, and just again, like I said at the beginning of the show, the generosity of spirit, I think is just it's it's it's a great model uh for the rest of us.

SPEAKER_00 1:04:01

Hey, thanks for joining us for this episode of Schizophrenia Three Moms in the Trenches with Randy K, Mindy Gryling, and Miriam Feldman. To get in touch with us or to learn more about our books, please visit our websites at MiriamHyfenfeldman.com, mindygryling.com, or randyk.com